Potentially Inappropriate End of Life Care and Healthcare Costs in the Last 30 Days of Life in Regions Providing Integrated Palliative Care in the Netherlands: A Registration-based Study.

Introduction: This study aimed to assess the effect of integrated palliative care (IPC) on potentially inappropriate end- of-life care and healthcare-costs in the last 30 days of life in the Netherlands. Methods: Nationwide health-insurance claims data were used to assess potentially inappropriate end-of-life care (≥2 emergency room visits; ≥2 hospital admissions; >14 days hospitalization; chemotherapy; ICU admission; hospital death) and healthcare-costs in all deceased adults in IPC regions pre- and post- implementation and in those receiving IPC compared to a 1:2 matched control group. Results: In regions providing IPC deceased adults (n = 37,468) received significantly less potentially inappropriate end-of-life care post-implementation compared to pre-implementation (26.5% vs 27.9%; p < 0.05). Deceased adults who received IPC (n = 210) also received significantly less potentially inappropriate end-of-life care compared to a matched control group (14.8% vs 28.3%; p < 0.05). Mean hospital costs significantly decreased for deceased adults who received IPC (€2,817), while mean costs increased for general practitioner services (€311) and home care (€1,632). Discussion: These results highlight the importance of implementation of integrated palliative care and suitable payment. Further research in a larger sample is needed. Conclusion: This study shows less potentially inappropriate end-of-life care and a shift in healthcare costs from hospital to general practitioner and home care with IPC.

The Spiritual Dimension of Parents' Experiences Caring for a Seriously Ill Child: An Interview Study.

BACKGROUND: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these parents are confronted with may lead to specific care needs. In this paper we explore the spiritual dimension of caring for a child with a life-threatening condition from the parents perspective. METHODS: We held an exploratory qualitative study with in-depth interviews with parents of children (0-21) with life-threatening conditions. Interviews were transcribed and subsequently thematically analyzed. RESULTS: Twenty-four parents of 21 children participated in the interviews. The spiritual dimension is an important, although not always visible, aspect of the experience of parents dealing with their child's illness. The main domains with regard to spirituality were: 1) identity; 2) parenthood; 3) connectedness; 4) loss or adjustment of goals; 5) agency; 6) navigating beliefs and uncertainties; and 7) decision-making. Parents also reflected on their spiritual care needs. CONCLUSION: The spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning.

Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home.

The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding. CONCLUSION:  Parents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. WHAT IS KNOWN: • Spiritual care needs are an important aspect of pediatric palliative care. • Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. WHAT IS NEW: • Parents and professionals mention barriers that hinder spiritual support for parents. • There is a disconnect between existing support and the care needs that parents have.

Effective communication in palliative care from the perspectives of patients and relatives: A systematic review.

OBJECTIVES: In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals. METHODS: A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021. RESULTS: In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient's and relative's process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting. SIGNIFICANCE OF RESULTS: Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review.

BACKGROUND: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. AIM: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care. DESIGN: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). DATA SOURCES: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents' perspectives. RESULTS: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. CONCLUSIONS: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.

Quality of hospital discharge letters for patients at the end of life: A retrospective medical record review.

OBJECTIVE: For patients who are discharged to go home after a hospitalisation, timely and adequately informing their general practitioner is important for continuity of care, especially at the end of life. We studied the quality of the hospital discharge letter for patients who were hospitalised in their last year of life. METHODS: A retrospective medical record review was performed. Included patients had been admitted to the hospital during the period 1 January to 1 July 2017 and had died within a year after discharge. RESULTS: Data were collected from records of 108 patients with cancer or other diseases. For 57 patients (53%), the discharge letter included information that related to their limited life expectancy (e.g., agreements about treatment limitations), whereas the patient's limited life expectancy was addressed in the medical record in 76 cases (70%). We found related information in discharge letters for 36 patients (66%) who died <3 months compared to 21 patients (40%) who died 3-12 months after hospitalisation (p < 0.01). CONCLUSION: For patients with a limited life expectancy going home after a hospitalisation, one out of two hospital discharge letters lacked any information addressing their limited life expectancy. Specific guidelines for medical information exchange between care settings are needed.

Development and implementation of a transmural palliative care consultation service: a multiple case study in the Netherlands.

BACKGROUND: In the Netherlands, healthcare professionals attending patients in the last phase of life, can consult an expert palliative care team (PCT) in case of complex problems. There are two types of PCTs: regional PCTs, which are mainly consulted by general practitioners, and hospital PCTs, which are mainly consulted by healthcare professionals in the hospital. Integration of these PCTs is expected to facilitate continuity of care for patients receiving care in different settings. We studied facilitators and barriers in the process of developing and implementing an integrated transmural palliative care consultation service. METHODS: A multiple case study was performed in four palliative care networks in the southwest Netherlands. We aimed to develop an integrated transmural palliative care consultation service. Researchers were closely observing the process and participated in project team meetings. A within-case analysis was conducted for each network, using the Consolidated Framework for Implementation Research (CFIR). Subsequently, all findings were pooled. RESULTS: In each network, project team members thought that the core goal of a transmural consultation service is improvement of continuity of palliative care for patients throughout their illness trajectory. It was nevertheless a challenge for hospital and non-hospital healthcare professionals to arrive at a shared view on goals, activities and working procedures of the transmural consultation service. All project teams experienced the lack of evidence-based guidance on how to organise the service as a barrier. The role of the management of the involved care organisations was sometimes perceived as unsupportive, and different financial reimbursement systems for hospital and out-of-hospital care made implementation of a transmural consultation service complex. Three networks managed to develop and implement a transmural service at some level, one network did not manage to do so. CONCLUSIONS: Healthcare professionals are motivated to collaborate in a transmural palliative care consultation service, because they believe it can contribute to high-quality palliative care. However, they need more shared views on goals and activities of a transmural consultation service, more guidance on organisational issues and appropriate financing. Further research is needed to provide evidence on benefits and costs of different models of integrated transmural palliative care consultation services.

Palliative care nurse champions' views on their role and impact: a qualitative interview study among hospital and home care nurses.

BACKGROUND: One of the strategies to promote the quality of palliative care in non-specialised settings is the appointment of palliative care nurse champions. It is unclear what the most effective model to implement the concept of nurse champions is and little is known about palliative care nurse champions' own views on their role and responsibilities. This paper aims to describe views of palliative care nurse champions in hospitals and home care on their role, responsibilities and added value. METHODS: In 2018, a qualitative interview study was conducted with 16 palliative care nurse champions in two hospitals and four home care organisations in the southwest of the Netherlands. The framework approach was used to analyse the data. RESULTS: Most palliative care nurse champions described their role by explaining concrete tasks or activities. Most nurse champions perceive their main task as disseminating information about palliative care to colleagues. A few nurses mentioned activities aimed at raising awareness of palliative care among colleagues. Most nurses were to a limited extent involved in collaboration with the palliative care expert team. Hospital nurse champions suggested that more support from the palliative care expert team would be helpful. Most nurse champions feel little responsibility for organisational tasks and inter-organisational collaboration. Especially hospital nurses found it difficult to describe their role. CONCLUSION: The role of palliative care nurse champions in hospital and home care varies a lot and nurses have diverging views on palliative care in these settings. Comprehensively fulfilling the role of palliative care nurse champion is a challenge. Careful selection, training, support and task descriptions for nurse champions are needed to make the concept of nurse champions work in palliative care.

Physicians' perspectives on estimating and communicating prognosis in palliative care: a cross-sectional survey.

BACKGROUND: Advance care planning (ACP) can help to enhance the care of patients with limited life expectancy. Despite physicians' key role in ACP, the ways in which physicians estimate and communicate prognosis can be improved. AIM: To determine how physicians in different care settings self-assess their performance in estimating and communicating prognosis to patients in palliative care, and how they perceive their communication with other physicians about patients' poor prognosis. DESIGN & SETTING: A survey study was performed among a random sample of GPs, hospital physicians (HPs), and nursing home physicians (NHPs) in the southwest of the Netherlands (n = 2212). METHOD: A questionnaire was developed that had three versions for GPs, HPs, and NHPs. Each specialism filled in an appropriate version. RESULTS: A total of 547 physicians participated: 259 GPs, 205 HPs, and 83 NHPs. In the study, 61.1% of physicians indicated being able to adequately estimate whether a patient will die within 1 year, which was associated with use of the Surprise Question (odds ratio [OR] = 1.65, P = 0.042). In the case of a prognosis of <1 year, 75.0% of physicians indicated that they communicate with patients about preferences regarding treatment and care, which was associated with physicians being trained in palliative care (OR = 2.02, P=0.007). In cases where patients with poor prognosis are discharged after hospital admission, 83.4% of HPs indicated that they inform GPs about these patients' preferences compared with 29.0% of GPs, and 21.7% of NHPs, who indicated that they are usually adequately informed about the preferences. CONCLUSION: The majority of physicians indicated that they believe they can adequately estimate patients' limited life expectancy and that they discuss patients' preferences for care. However, more physicians should be trained in communicating about patients' poor prognosis and care preferences.

Quality of collaboration and information handovers in palliative care: a survey study on the perspectives of nurses in the Southwest Region of the Netherlands.

BACKGROUND: When patients receiving palliative care are transferred between care settings, adequate collaboration and information exchange between health care professionals is necessary to ensure continuity, efficiency and safety of care. Several studies identified deficits in communication and information exchange between care settings. Aim of this study was to get insight in the quality of collaboration and information exchange in palliative care from the perspectives of nurses. METHODS: We performed a cross-sectional regional survey study among nurses working in different care settings. Nurses were approached via professional networks and media. Respondents were asked questions about collaboration in palliative care in general and about their last deceased patient. Potential associations between quality scores for collaboration and information handovers and characteristics of respondents or patients were tested with Pearson's chi-square test. RESULTS: A total of 933 nurses filled in the questionnaire. Nurses working in nursing homes were least positive about inter-organizational collaboration. Forty-six per cent of all nurses had actively searched for such collaboration in the last year. For their last deceased patient, 10% of all nurses had not received the information handover in time, 33% missed information they needed. An adequate information handover was positively associated with timeliness and completeness of the information and the patient being well-informed, not with procedural characteristics. CONCLUSION: Nurses report that collaboration between care settings and information exchange in palliative care is suboptimal. This study suggests that health care organizations should give more attention to shared professionalization towards inter-organizational collaboration among nurses in order to facilitate high-quality palliative care.

Satisfaction with care of hospitalised patients with advanced cancer in the Netherlands.

We aimed to assess the level of satisfaction with hospital care of patients with advanced cancer and its association with quality of life and other patient characteristics. Eligible patients were asked to fill out the EORTC INPATSAT-32 questionnaire, measuring patient satisfaction, and the EORTC QLQ-C15-PAL, measuring quality of life. Factor analysis was performed to identify underlying patterns in satisfaction. Multivariable regression analyses were used to assess associations of quality of life and other patient characteristics with satisfaction. A total of 105 patients participated in the study. The mean general satisfaction score was 72 (SD 21). Factor analysis identified three underlying dimensions: satisfaction with nurses (explaining 62.1% of the total variance), satisfaction with physicians (7.7%) and satisfaction with hospital services (5.3%). Associations were found between global health and general satisfaction (ß = 0.35, p = 0.01), and between emotional functioning and satisfaction with hospital services (ß = 0.016, p < 0.01). Further, diagnosis of breast cancer was associated with satisfaction with physicians (ß = 1.06, p < 0.01) and dyspnoea with satisfaction with hospital services (ß = 0.007, p = 0.03). Patients with advanced cancer are reasonably satisfied with hospital care. The INPATSAT-32 mainly measures satisfaction with nurses. Satisfaction with care and quality of life seems to represent distinct outcomes of hospital care in patients with advanced cancer.